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I am a pro musician and I just found out I have Lupus

Hi my name is John. I am 45 years old and I live in Ocala,Florida.

I am a pro musician and I play Guitar in a classic rock band. I just found out 2 weeks ago that I have lupus and I am just devistated.
I feel like my life has stopped. I am scared,mad,pissed,frustrated and many other words that I cannot say. I went in to the doctor because my toe joints were hurting and she ran a arthritis blood test and it came back with S.L.E. I dont have any other symptoms but the joint pain.
I am scared and feel all alone. I feel worthless and am sad all the time.
I play with the band on the weekends and I even am starting to loose enjoyment there. I really need some friends right now.
my e-mail is: badattitude5759@aol.com
my bands website is: www.badattitude.us
please sign our guestbook............Thanks.......John

I think I know how you feel. I was diagnosed late last year. Before this I spent about 8 months totally bedridden. I had to leave my job as the work was too physical. So everything in my life came to a crashing halt.

The way I get through each day is to look at the whole thing as a new chapter in my life rather than something that has devastated it. So all the little things that interested me but I never had time to try, I can now do. Now I believe I hold the world record for having the most hobbies.

What symptoms do you have? Are you still in the band? What instrument do you play?

Hi John;
I, too, am a musician. Actually, a vocalist. With this disease, I have had a miriad of problems (and even some unrelated problems) which have affected my singing. But, each time that I think I will never sing again....I find that, somehow, my voice is still there. It has changed several times which meant I had to re-learn how to use and control it more than once. But, I never let my lupus keep me from doing the one thing that I truly love the most ....."MUSIC"
It is a constant challenge, but I am resolved to never, ever give it up.
Please do not let this disease take you away from the joy of your music. Like Jeannie said, keeping busy doing things that you enjoy is very, very important!!
We all know how sad and lonely this disease can be....your doctors should recognize that what you are going through is pretty normal for Lupus sufferers and he/she should start treating you for your symptoms. Please know that YOU ARE NOT ALONE. You are valuable and important...treat yourself as such!! Make your health your priority, know that there are medications, treatments and all kinds of help for you. We are here anytime that you need us.
Don't give up...keep making music!!!
Peace and Blessings
Saysusie

Welcome, John. I'm sorry to hear of your pain. I can only hope that now that you know what is going on, that your docs can help treat your symptoms and give you some relief. I think it's great you have music as a creative and energy releasing outlet. You are going to have some great emotions to lend to your music! I'm 27, and have had pretty bad kidney problems for 6 months, but seem to be improving. I have to say that sometimes I thank Lupus, because it's given me much more perspective on life. I'm way more appreciative of my good days, appreciate the teeniest things, and really have learned that there are a lot of people that care about me. It's funny how you can forge that. It might sound a tad cliche, I know, but I'm not mad at Lupus or my body. I want to focus my energies, instead, on improving my health. Acupuncture has really helped my kidney pain (I'm on a ton of Western meds as well). And letting the people in my life know what is going on has been integral - they might not know what to say, but they really do want to know how you are. And I think it can help with the loneliness, depression, etc.

another pro musician with lupus

hey there
Carla here. I jsut found this webpage today. I've had lupus since 1992 (though it took a year for them to figure it out).

I was fired from my job in music retail (selling guitars and pianos and teaching guitar lessons) in 1993 and was denied disability because i guess i didn't use the right words on my application and didn't know you have to get a letter from a doctor. so I've been working for myself ever since, teaching guitar lessons and writing and performing original music. I had that retail job because i thought it provided security then ironically i got fired from it when i needed security the most.

I'm in the process of trying to get disability again (trial is next friday) and my laywer is ignoring my calls and my doctor won't write a letter because he says he doesn't want to get harassed by social security with a bunch of questions he can't answer. not much compassion out there among these "professionals."

anyhow i relate to the fear and frustration and fear of the future that we all go through when getting diagnosis (i also know about denial which i still slip in and out of!)

thank god for these online forums, because i believe there is more freedom of speech here. i went to a support group and the particular one i went to did not encourage discussing feelings or alternative treatments, the things i find most therapeutic. i formed my own support group- there were 4 of us in my hometown with lupus- and we talked openly about feelings and alternative care, as well as prednisone and disability etc. it felt really good to have others i could be real with.

i had a stroke in jan 2002 and could nto play guitar for most of that year and it was then that i finally learned that who i am is not what i do. when i could not even take care of myself i struggled with self worth issues.

If you are strictly joint problems, it still is scary and sucks, esp trying to play the guitar- i've played guitar since age 4 and my identity is very wrapped up in it and of courss in being able to support myself.

you may wish to check into whether you have food allergies, becaue 100% of lupus patients do have food allergies and joint problems are very often helped by diet changes. the good news is that even on a really bad day- and my lupus is severe- i can take enough drugs to make my hands work and i can still play- or rather- i am *back to being able to play again* after having to re-learn from scratch. i could nto even make a C chord 2 years ago. i can't travel and play every night- i have to pace myself and get rest- but fortunately being a musician does nto require me to get up until after noon, as i feel worst early in the day.

Oh yes i got a parrafin wax hand bath- they're only about $40- and use it to treat my hands when they're really swollen adn stiff and it's really effective.

you have my understanding sympathy and hope as a fellow person with lupus diagnosis and as a fellow pro musician
glad you are here typing!
Carla

Professional Smart Aleckwww.carlau.com
"A clown is like an aspiring, only is works twice as fast."- Groucho Marx

Hi Carlau and welcome to our forum :lol:
Thank You For Being Here and Thank You For your supportive words to John.
I am glad to hear that you were able to return to playing guitar after your stroke and that you have not given up on your music!!
Yes, we are here to provide you with a place to talk about your feelings, a place to feel supported and to know that you are not alone!!
Again...thank you and Welcome
Saysusie

my Social security trial date is this friday! agh! scared!

Hi!
Thanks for the warm welcome!
My trial looms ever closer... it's this friday. had anyone here ever gone to trial and won?
i know several people who won with just an applicaiton but noone who's been denied twice then gone to trial then won.
Carla

Professional Smart Aleckwww.carlau.com
"A clown is like an aspiring, only is works twice as fast."- Groucho Marx

Carlau:
I do not know of anyone who has wone at trial. I was denied twice and just gave up :? Maybe I should have continued to fight, but the stress was a bit too much for me.
I wish you the best of luck and I admire your strength to keep up the fight! It is so unfair how DIB just sweeps our cases aside! We are all rooting for you!
Good Luck!
Saysusie

I won disability for lupus. Once when I was 22. It took a lot of work - but finally we got it. I had to sit in a trial with my attorney, a judge, and someone representing the state telling all the jobs she thought I should be able to get. They were crazy jobs like school bus monitor and stuff. Anyway - I ended up winning. I got very little per month, but I did get retroactive pay. So all of that got me through a tough time.

When I was in California, I got disability as well. I had a seizure and was unable to work after that. California is much easier to get disability because there is a tax taken from your pay for the state disability tax, so if you have put money into it, you are allowed to use it if needed. I got that for about a year - and that was a much more substantial amount.

Both times, though, I had to have a huge stack of forms filled out by both me and my doctor. I know most dr offices charge a fee - around $25 to fill out the paperwork.

I was lucky to get a good attorney who really fought to understand lupus and explain to the judge how misunderstood the disease is. He had a lot of my medical records outlining the miriad of issues I had gone through.

Anyway, best of luck. I know it's very difficult for lupus patients to get disability, but it CAN be done. I'm proof!

I went to my attorney today and although he is listed on the board of the lupus foundation he seems to have no undestanding of lupus whatsoever. and he has not read ANY of the reocrds I ahve sent him. My trial is Friday. He was rude to me, rude to my friend and reduced me to tears in the meeting, which is unusual for me and humiliating. he took 4 days to returns several calls from me last week. He clearly is uninformed about me, my illness and my case, and does not have any concern for me as a human being. I am wondering if I should ge tthe trial postponed until i can find a good lawyer.

I assumed because he was on the lupus board he would know about lupus but he doesn't not seem to. it seems to jsut be a place to stick his name so he can get referrals. i am extreemly upset and siappointed. he filed an appeal, the basically kept telling me i had to wait for a trial and was not interested in discussing my case until 2 days nbefpre the trial. i have waited 21 months since my 2nd denial for this trial to come around and i don't want ti to be blopwn because of his carelessness and indifference.

any advice????? should i postpone?

Professional Smart Aleckwww.carlau.com
"A clown is like an aspiring, only is works twice as fast."- Groucho Marx